I'm currently doing my master's in marriage and family therapy to ultimately become a therapist with a private practice (strange field for an Aspie, no?), and I recently wrote this paper for my cross-cultural counseling course. Hope you enjoy it. Warning: it's a bit long. If anyone has suggestions for other places to post it as an article, please let me know.
The Cultural Struggles of those Living with
High Functioning Autism and Asperger Syndrome
Laura McMillian
Pepperdine University
Graduate School of Education & Psychology
High Functioning Autism and Asperger Syndrome are lifelong neurobiological conditions on the autism spectrum whose symptoms are less severely debilitating than autism featuring mental retardation and more relevant to social skills deficits and specific mental and behavioral patterns, such as focused interest in specific subjects and sensory hypersensitivities. For the purposes of this paper, I will refer to people with either of these disorders as “Aspies,” to High Functioning Autism as “HFA,” and to Asperger Syndrome as “AS.” Individuals who do not have autistic spectrum disorders are referred to as “neurotypicals,” or “NT’s.” The research question this paper attempts to answer is, what kind of cultural experiences do adult Aspies experience within Western society in terms of differences from the majority (special abilities and disabilities), stigma, social acceptance, and disclosure concerns? In the process of this exploration, we may discover the nature of what I call neurotypical privilege.
Problems Socializing and Working
The Elusive Relationship
The difference between individuals with classic autism and those with AS is that the latter craves relationships with people whereas the former are more interested in objects than people (Lovett, 2005). Because Aspies lack the capacity for advanced social skills, such as recognizing subtle facial, bodily, and verbal cues, they frequently misunderstand others and others, in turn, misunderstand them. One of the largest problems is their difficulty understanding the thoughts and feelings of others, since empathic imagination is lacking (Convit, Dziobek, Hassenstab, Rogers, & Wolf, 2007). The inability to see another’s perspective makes relationships more difficult (Lovett). And, because their brains work differently, more effort is required to be in a relationship than for neurotypical people. As Asperger expert Tony Attwood points out, “Conventional social occasions can last too long for someone with Asperger’s syndrome, especially as social success is achieved by intellectual effort rather than natural intuition. Socializing is exhausting.” (2007, p. 91) So the desire to be social and the difficulties involved with being social are often odds, creating an uncomfortable dilemma that requires understanding and patience from others. And, because Aspies think differently from most others around them, they have difficulty finding people they like and often choose solitude over company (Attwood). But this problem goes in both directions, since they may be shunned by the majority, especially in school. Solitude may then be experienced by default, and loneliness may develop.
Misunderstood, Overstimulated, and Unemployed
Because Aspies have an “idiosyncratic way of processing both social and nonsocial information,” they often behave in unattractive ways to others, leading to repeated rejection and ridicule (Gaus, 2007). Bullying is also common (at least 4 times the rate reported by neurotypicals from 4-17 years old), since Aspies tend to have a trusting nature along with the inability to predict the thoughts of others (Attwood. 2007). As a result, there is often a lack of adequate social support and a resulting sense of isolation, which have such clinical repercussions as depression and anxiety (Ghaziuddin, 2005).
Aspies display varying degrees of interactional dysfunction in that some may suffer greatly and be noticed for it while others “pass” as normal (Stoddart, 2004). Some examples of unspoken social rule errors Aspies make include speaking too loudly in inappropriate situations, cutting ahead of lines, interrupting conversations, failing to notice social cues such as when someone wants to leave or finish a conversation, taking innocent jokes as serious criticisms, and taking jokes too literally so that the punch line is not responded to in the desired manner (Gaus). Some may have no idea how to initiate a friendship, respond to criticism, or keep up a healthy sexual relationship with a partner (Gaus), while others may learn how to do these things eventually with enough focus and practice. “Other AS-related issues may complicate the effort to be in a relationship. Sensory integration problems that are common in AS can make touching and physical closeness uncomfortable or even painful” (Lovett, 2005, p.199). Unaware individuals may touch or hug an AS person, unwittingly putting him or her in the awkward position of wanting to avoid that person yet still seeming interested in being social. Education of close persons who are wont to such touching behavior may be warranted in some cases.
High Functioning Autism and Asperger Syndrome also cause problems in nonsocial domains, including mental organization and executive function (planning and directing one’s actions), which raises the overall stress of living (Gaus, 2007). They may be judged negatively by others with higher expectations for their functioning, such as parents, teachers, or employers. According to Lovett (2005, p. 172), “There is research that shows that autism spectrum disorders do seem to cause many people to live in a state of hyper-arousal – a sort of prepanic state that can be very debilitating.” Thus, Aspies need more time to rest, recuperate, and become refreshed between activities than neurotypicals, causing difficulties in cases where regular work schedules are demanded. In addition, sensory issues like problems tolerating the light wavelengths and intensity of fluorescent lights, which are common in workplaces of all kinds, may interfere with comfort and performance at work (Attwood, 2007). It is not surprising, then, that, in the United Kingdom, only 12% of people diagnosed with HFA/AS are employed full-time and 6% are employed part-time, leaving all of the remaining 78% unemployed (Jacobs, 2003). They may also be erratically employed, and frequent changes are stressful to the autistic mind that requires stability for well-being. These issues have ramifications like low income and inadequate health care coverage, which not only reduce standard of living but also pose barriers to obtaining psychotherapy (Gaus).
Gender Nonconformity in Styling, Interests, and Activities
Individuals with AS may appear gender unconventional in their styling, interests, and activities of choice. Problems with motor coordination may make sports difficult – an unpleasant situation for many boys (Butler, Ghaziuddin, Ghaziuddin, & Tsai, 1994). And boys with AS have a tendency to develop female friends, since other boys may shun them and girls may pick up on their loneliness and offer support; therefore, the Asperger boy may develop feminine “body language, vocal characteristics, and interests,” be insulted as “gay,” and be shunned by their male peers even further (Attwood, 2007, p. 80). This experience may contribute to gender identity problems (Attwood, 2007).
Girls with AS “tend to prioritize logic, truth, and comfort over peer pressure” (Attwood, 2007, p. 81). Their clothing choices may be masculine or unpopular, since such options are most practical and comfortable; they are less likely to care about what is in fashion than NT girls, sometimes lacking the desire to appear feminine (Attwood, 2007). Indeed, there is a correlation of females on the autism spectrum with bisexuality or tomboyism to a larger proportion than the general population, according to a study in Hormones & Behavior; this trend is theorized to be the result of higher fetal testosterone in the womb, and testosterone makes the fetus more vulnerable to the development of autism, which also explains the higher prevalence of male autistics (Baron-Cohen, Ingudomnukul, Knickmeyer, & Wheelwright, 2007). Therefore, most Asperger females are less likely to fit in than neurotypical females on average and experience marginalization as a result.
On the other hand, biological or cultural differences may make being an Aspie easier for girls than for boys in some ways. “Women…are often under more pressure to fit in than men are, and some women with AS has worked out ways to benefit from this” (Lovett, 2005, p. 204) They are socialized or predisposed to be socially focused and to mimic female social models, which may lead to less obvious differences in behavior and increased social skills learning. Boys may have an easier time in a different way –males are generally less expected to demonstrate empathy, which is naturally difficult for all Aspies, so an abnormality in that realm is not perceived.
Stigma
Labeling and the Stigma of an Invisible Disability
A label can be incredibly stigmatizing for an individual, and some interpret this dark mark as a message that society has given up on him or her, which may lead to learned helplessness and giving up on one’s self too (Stoddart, 2004). Peter Jansen discusses the pain of experiencing others’ awareness of his disorder (Stoddart, p. 314):
…an AS diagnosis will remain largely undiscussed, and the only stigma
will be self-inflicted. This is because of how little the public knows about
AS, how unlikely they are to self-educate, and how scarce information is
about it. For most people, I imagine the phrase ‘Asperger Syndrome’
would mean nothing, yet would leave an imprint of vague unease in their
minds, precisely because they don’t know. This vague ill-at-ease feeling
in the minds of others can be, and often is, the very cause of the stigmatizing
effect felt by those implicated by the label.
Because of the potentially toxic effect of diagnosis on emotionally vulnerable Aspies, a strong support system is especially important. The invisibility of this disability is likely to lend itself to greater judgment than visible disabilities because what is perceived as poor behavior may be judged as a lack of discipline rather than a biologically-predetermined response (Dinah, 2006). Here, the individual or, more commonly, the parents are blamed for the problem. Susan Sontag noted that, worldwide, people show a pattern of aiming moral judgments at sufferers of illnesses without noticeable physical signs that are confusing to them or incurable, such as cancers, mental illness, and tuberculosis (Grinker, 2007). Because of the American ideal of individualism and the rise of psychoanalysis, people are expected to be changeable and responsible for self-improvement, but autism – an indelible neurological condition – creates shame when autistics are marginalized and demonized for being themselves, as are their mothers when incorrectly blamed as “refridgerator mothers”(Grinker).
Throughout history, those who have been incapable of meeting society’s requirements for normalcy have been seen as something other than human and as a threat to the well-being of society if left to their own devices (Clements, 2005). Out of this fear and ignorance springs mistreatment and segregation where none is beneficial to either society or the individual. Contrary to the view of abnormal people as useless burdens, a great number of Aspies have made significant contributions to society in the forms of inventions, scientific advances, technology, political philosophy, art, and music due to their intense focus on subjects of interest combined with average to above-average intelligence, which is why the anti-cure movement exists; the Asperger community network, which has a vast Internet presence, has the same degree of pride as the deaf community (Schopler, 2001).
Fortunately, America has recently reached a point at which it has become able to examine issues of diversity with a more understanding eye; the very word diversity now has positive connotations, and it has been extended beyond ethnicity and race to include the differently-minded and eccentric (Grinker). The increased understanding of children’s behavioral and learning differences has changed the way autism is defined, viewed, discussed, and treated – more comfortably. Nevertheless, we have a long way to go in increasing acceptance and understanding.
Living in other cultures as relief
Some people with AS enjoy visiting foreign countries for a long period of time or even living abroad for the reason that, when social mistakes are made, they are viewed as cultural differences instead of inherent strangeness, negative assumptions, or ill intentions (Attwood, 2007). For example, a British man with AS that Tony Attwood met while in Japan told him that the Japanese were highly accepting of his “social clumsiness.” (Attwood, 2007, p. 90). And many people from India see autistics as potentially divine teachers or saints and find similarities to Hindu deities like Siva, who had no friends, could not relate to others, and was always naked (Grinker, 2007). On the other hand, some cultures may stigmatize autistic behaviors even more than U.S culture; in South Africa, autistics are believed to be possessed by a demon (Grinker). Visitors to the United States or any other country might have similar struggles adjusting if social rules differ from those of the person’s culture of origin. Therefore, it is also common for Aspies to make friends with foreign visitors, since they face nearly the same challenges of acculturation (Attwood).
Disclosure concerns for adults with HFA or Asperger: Pros & Cons of “Coming out”
Disclosing to friends or family should be done on a need-to-know basis – that is, when one’s AS status is significantly affecting the relationship and mutual understanding is necessary, according to Asperger advocate Stephen Shore (Dinah, 2006). Disclosing too early may alienate individuals and lead them to look at and talk to the Aspie strangely, whereas disclosing too late may anger them because they were not let in on this personal information sooner (Dinah). Lianne Holiday relates that some people speak to her as though she is stupid or deaf, not realizing that neurological difference does not mean she is severely compromised or has a defective personality (Dinah). Lianne has also lost jobs by disclosing too quickly and been shunned by her neighborhood community, so she is grateful for her husband’s support during those times. Disclosing during job interviews may discourage interviewers from hiring an AS person, so stating individual problems of concern is more practical (Dinah).
Discussion
Living with HFA/AS poses many obstacles, specifically social and sensory difficulties, which neurotypicals misunderstand or respond to negatively. These obstacles have implications for the AS individual’s personal life, physical well-being, employment, and finances. Aspies tend not to understand subtle social cues and are frequent targets of bullying and social exclusion. Degree of severity varies for each individual on the autism spectrum, with some able to “pass” as normal and to adjust by learning how to execute accepted social behaviors through intellectual means. Others remain marginalized and confused indefinitely. Whether to disclose one’s Aspie status is dependent on how necessary this disclosure is for the functioning of the relationship and whether such disclosure would be damaging. Physical problems include sensory hypersensitivity, which have social and work ramifications (touch, sound, and light sensitivities), and a tendency toward living in a state of hyper-arousal, which is exhausting. Seventy-eight percent of Aspies are unemployed, and those who are employed are erratically employed, which adds further stress due to destabilization of surroundings. The stigma of disability may be greater for those with an invisible disability because moral judgments are more easily passed when visible signs of disability are absent. The current trend in the U.S. toward tolerance for diversity and the autistic pride movement, with its emphasis on the wonderful achievements of autistic people, may offer hope for Aspies.
Conclusion
The U.S. public is already getting more exposure to Asperger Syndrome through pop culture and the mass media: the TV show Boston Legal features a character with AS, and a recent contestant on America’s Next Top Model (Heather Kuzmich) also has AS. I agree with Lovett that it is important for NT’s to become better educated on the disorder so that they may learn to identify when an Aspie is overwhelmed, not to take it personally, to avoid attributing every single behavior to AS, and to remember that AS is not an excuse for bad behavior (2005). In my opinion, all schools should provide presentations to each student body so that greater awareness is achieved and less bullying occurs in conjunction with disciplinary action against bullying. Disability accommodations for higher functioning autistic and Asperger students and employees should be provided to an extent to assuage sensory and information processing difficulties, such as attenuation of fluorescent light use, social skills coaching by counselors, and help with understanding verbal instructions. As a therapist, I would coach individuals with HFA or AS to be assertive enough and to defeat any shame to ask for such accommodations as well as teach and practice social skills through dialogue, psychoeducation, and role-playing. I would also be empathic towards their struggles with the reactions of larger society and the individuals that compose it, highlight the positive traits and abilities associated with HFA/AS to emphasize the value of their uniqueness, and validate the pain felt from the disabling aspects of their condition.
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Last edited by anathemaviolet on 19 Dec 2007, 5:35 pm, edited 2 times in total.
19 Dec 2007, 4:36 am
